Cystic Fibrosis Support Group
Cystic fibrosis, (CF) is a common hereditary human disease which affects many different parts of the body, including the lungs, pancreas, gastrointestinal tract, reproductive organs, and sinuses. This support group is dedicated to those coping with cystic fibrosis. Find support, meet others who face the same challenges, ask questions, and share your experience.
My daughter needs a CT Scan for this. I was wondering if any has had it or has a child that has? Depending on the scan, she may need a pic line. She is only 4. I don't know if she will leave it alone. I bought some books on Amazon today too. I am going to be reading the Spirit of Lo, With every breath, Give me one wish and Mallory's 65 Roses (which is a children's book). I will let everyone know how they are. I read Alex: Life of a Child and was not happy I did. I heard these were uplifting.
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A friend sent this to me..As far as I can see, grief will never truly end.It may become softer overtime, more gentleand some days will feel sharp.But grief will last as long as Love does - ForeverIt's simply the way the absence of your loved onemanifests in your heart. A deep longing accompaniedby the deepest Love some days. The heavy fog mayreturn and the next day, it may recede.Once again, it's...
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Today is my 25th birthday, to my somewhat lack of surprise I can see already no one really seems to care. I've always been the kinda person to make sure that everyone I Care about feels appreciated and knew somebody had their back. I can count 4 times this year when I Went out of my way to make sure a "friend" felt good on their birthday, especially if they got left hanging. Its early in the...
Sometimes I think you have a copy of my medical records instead of your daughter's. I have had bronchiectasis since the 1970s. Keep in mind I am starting to work more after being in the hospital for the first extended stay (36 days) in my fifty years. For the record the defective genes I have are F508 and 3849+10KbC>T. If this is the pair that your daughter has she will very likely have a milder form of the disease and will still have to fight but with knowledge and determination can live a good long life. Don't get me wrong CF sucks, it affects every part of your life in some way but believe it or not the affects are not always bad. Most of the time though they are bad. CF interrupts my sleep. When I can't sleep I do research on the internet or do something else while I am taking that 3:00 AM breathing treatment. Sometimes I write in a journal or respond to other people affected by CF in some way. It's not all bad but given the choice I would prefer to not have it without a doubt. But the key is to not let the fear and despair take your life, don't let the diagnosis kill you make the b*stard , (the actual disease) fight you for your life and make the fight as hard on it as possible. I have very little hearing in my right ear because I took MEGA doses of an antibiotic to repel a major infection. If I had not done this the infection would have taken my life. So when a doctor tells you some treatment has risks, don't reject it without looking carefully at what is at risk because just about every treatment has some risk and I can always get a hearing aid as long as I can breathe well enough to change the battery. I have included a brief explanation of what Bronchiectasis is but the main thing to understand is that it is part of CF and especially certain bugs like Psuedomonas A. Which as I have written to you before that I have been colonized with for years. You may hear other conditions like COPD, that is an umbrella term meaning someone has blockages in their lungs which don't go away. Obviously someone with CF will have COPD but that does not mean that all of a sudden things are much worse, it is just another name for the same old crap.
According to one of the Merck Manuals :Bronchiectasis is dilation and destruction of larger bronchi caused by chronic infection and inflammation. Common causes are cystic fibrosis, immune defects, and recurrent infections, though some cases appear to be idiopathic. Symptoms are chronic cough and purulent sputum expectoration(infected mucus); some patients may also have fever and dyspnea.
Diagnosis is based on history and imaging, usually involving high-resolution CT, though standard chest x-rays may be diagnostic. Treatment and prevention of acute exacerbations are with antibiotics, drainage of secretions, and management of complications. Treatment of underlying disorders is important whenever possible.
Good luck and God bless us every one.
Kaiser Willy
She doesn't have bronchiectasis...She did have some white mucus but her CT Scan came back and it looks like bronchiectasis is out and peribronchial thickening is in!! Which seems a little better maybe even alot better but I don't want to be too cocky until the cultures come back...
She will need to see and ENT because her sinuses are a mess....but all in all...I am feeling pretty positive right now and don't want to ruin it!!!!!!!
Mary